Approximately 1 in 6 children have special health care needs and half of those have functional limitations or disabilities. Such children use health and related services on average two to eight times more often than children without these conditions. Health care systems and clinical practices are poorly designed to deliver high quality health care to children with chronic conditions. Reform efforts such as the Medical Home and the Improving Chronic Care Model have been shown to improve clinical outcomes but more progress is needed. This paper argues that establishing clinical goals and measuring health outcomes in the care of children with chronic conditions should focus on the nature and extent of functional limitations in a wide range of domains. The International Classification of Functioning, Disability, and Health (ICF) provides a conceptually-driven diagnostic and statistical manual that can be used at the clinical and public health levels to assess and monitor functional outcomes. The newly released ICF-Children and Youth Version has been designed specifically for children up to 18 years of age. The results of functional classification with the ICF can be integrated with medical and mental health diagnoses in a multi-axial assessment of the patient, providing a standardized and therapeutically relevant description of the individual with chronic conditions through a number of domains or axes. Each functional problem requires its own plan for intervention. Functional classification is compatible with other reform efforts, such as the Medical Home initiative. Routine use of functional assessment and classification in the care of children with chronic conditions will lead to a comprehensive or “wholistic” approach to the child and family.
Keywords: developmental disabilities, children with special health care needs, functional classification, chronic disease, disease management
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